Wednesday, November 26, 2014

VP Shunt surgery (revision, #32 or 3)..Discharged

Surgery which was delayed from Thurs to Fri due to to high of an INR was post-poned to Fri morning but finally occured! Because of the to high INR Dr.Bragg opted to admit to the floor (Neurosurgery) and 2 bags of the fresh frozen plasma + a small dose of Vit K. brought INR, which is the blood thinner level to 1.3 by Fri. morning. I needless was relieved and soooo glad to just be getting this over with!
Aldurazyme
(ordered by the floor Pharmacists and given while in-pt.)

Surgery itself was really short (apparently about 20-30mins) as Dr.Bragg ended up finding the problem right away at the proximal (top) part of the VP shunt (the part that goes in to the ventricle in the brain). I'm not entirely clear but I think she just replaced the valve as she said when she initially tapped the shunt pre-incision there was some flow, albeit sluggish.
Once they had the site open she said there was very little spontaneous flow and clearly a occlusion albeit she felt a partial occlusion. She also commentd to me when we talked that after they changed the valve the CSF flow was much more normal. She cont's to feel it is our "Drain, collapse, pressure builds, ventricles are forced open, drain, repeat" that causes these shunt occlusions. Given symptoms I can't really disagree.
Non-the-less I am just extremely grateful she was able to do whatever she did to be able to get me admitted over-night and do surgery Fri (vs having to wait till this wk or longer). I hope she really knows I appreciate her effort on my part AND not giving up when I know she wasn't entirely certain my symptoms where due to this shunt/shunt in general.
Talking earlier Tues night before I was discharged Dr.Bragg did make the comment along the lines of "In the future we know now the symptoms you had are likely a partial occlusion and not to let it escalate so much". I think she meant perhaps that while I often looked fairly normal as if feeling fine the appearance can be deceiving. I do get comments albeit well meaning from time to time on "are you still having headaches" I think b/c very few people see me at the worst points of the day.
I know people rarely see me when I feel badly as I try to schedule most appts in the afternoon or at the very least late morning and I rarely am around people at the times of day that are my worst.
I didnt really expect going in to get complete symptom/headache relief which I did not BUT I am grateful to be feeling somewhat better and while I do hope someday we can figure out something that would give full headache/symptom relief I also really know to appreciate the improvements I did get with this (revision) surgery.
I think really, atleast Dr.Bragg seems to believe me, to want to keep trying to help which snyone who has followed this over time knows is a fear of mine (Dr.Bragg at some point not helping. I am my own worst enemy when it comes to believing people and that they really arent going to give up!

Anesthesia
Apparently there may be some Anesthesia-airway changes as Dr.Bragg had mentioned something about Anesthesia and the Anesthesiologist (who'd had me atleast once before though admittedly I didn't remember her) mentioning that she felt my airway had narrowed further since the last time she intubated me.
As far as what Anesthesia uses each surgery they tend to follow similar approaches used in the past whether they use a Glidescope to better visualize and get the endotracheal tube in or fiberoptic intubation, etc. I am not entirely sure what the differences are.
I guess as far as this surgery they had a difficult time getting a secure airway though thanks to the glidescope instrument used other than being dry I didn't have a sore throat though which is always nice! I know my airway has already been a problem so hopefully this won't mean we can't still do the light sedation and airway bagging while they work to get the endo tube in. There are some instances where a Patients airway is so narrow that they have to literally be intubate while awake - could you imagine? I do think from what Dr.Bragg said it may not be to bad if any change but something that may vary surgery to surgery?
I do know from what the Nurses and Dad said Anesthesia/intubation took alot longer than the actual shunt revision due to issues apparently. Per Dr.Bragg she wasnt sure if airway was in fact changed or was the Anesthesiologist remembering my past surgery with her different than it had been.
The concern was apparently a tighter/stiffer jaw and reduced mouth opening as they tried to sedate/intubate.
Although they still did not shave alot of hair with this surgery and it is growing in already I must say this was by far one of the most noticeable 'cuts' i've gotten with a revision. I am not sure if that is b/c my hair is so much shorter in general but I am hopeful it will keep growing back at the pace it is over the past almost week!

On a side note although the TPL Shunt has been annoying no doubt due to the on-going cough (a month or so now) but I am VERY grateful at the same time it is draining so well as that shunt meant the different between feeling pretty bad over the last month but still able to function (modify when or how I did things) whereas I am very positive without this TPL Shunt I'd have not made it and would have ended up in the ER. It seems also surgery may have helped for whatever reason a small bit with the actual cough. I still have it, worse as the day goes on but no where near as bad as it had been. Odd!?
I do see the Pulmonary dr comng up and while symptoms arent perfect they do seem to have improved some with this revision, not sure why that would be but I won't complain!
The night before and after surgery they wanted 02 (oxygen/heart rate) monitoring which I must say is nothing short of annoying but curiously the O2 (oxygen) level would frequently dip in to the 80's no matter when we adjusted or changed the finger probe. The beeping eveytime heart rate or 02 went to high or low was nothing sort of annoying!
One of the nurses i've had before was asking about the cough pre-surgery (the night before) and made the comment factoring in the cardiac components along w the TPL Shunt that the symptoms I was having made sense "with those issues the fluid has no where to go". I guess I hadnt really thought of it like that but perhaps true.
Otherwise fairly uneventual surgery/stay, happy to be home and know of 1 or 2 things to square away (better plan) for future surgeries.
Thanks for stopping by,
Erica P.S. the # of shunt revisions all minus 3 has been in the past 3.5yrs, the prior 3 where since 2006 when I was first shunted - kind of crazy isn't it? And yet for anyone who wonders perhaps you can see why I am so grateful for Dr.Bragg for her persistence especially in times I know it wasn't all that clear it was the shunt
The best visitors to have - my Sister, Mom and Niece and nephew came Sat.

Thursday, November 20, 2014

VP Shunt surgery delay, admitted for INR pre-surgery.

Today's surgery was cancelled due to to high of INR (how thin the blood is) which really sucked both since surgery had been rescheduled once before and bc I was already in pre-op. I knew whatever an INR draw showed yesterday though wouldn't represent today since my last dose of Coumadin was Monday so had figured it would be within a 'surgery safe' range atleast by this morning, 3 days off the med. Not so much, the level was 2.2 and "safe" is 1.5 or under it seems.
Thankfully once my Neurosurgeon came up to Pre-op she was able to sort out a alternate not quite bad plan - she was able to admit me to D6-4 (Neurosurgery floor) with the plan to give Plasma (FFP) and Vit K this afternoon in order to bring down the INR with surgery as an add-on case tomorrow (meaning we won't know a time and could be anytime during the day).
It definitely sucks to be here another day and for surgery to have been cancelled but grateful Dr.Bragg was able to be flexible and work out a plan to go ahead with surgery.. I just want it done!?!
Admittedly and this is quite stupid but this is the shortest I've ever had my hair during a shunt surgery so that part makes me a bitt nervous ie how noticeable is it going to be (the incision, small shaved area, like I said stupid) but non-the-less feeling better would still be better..

"I have a hard time sometimes explaining my Providers (and frankly how annoying it is sometimes) to family and sometimes friends and yet how in many aspects these same Providers have been great for my care and are very good on my Team. I know my Mom doesn't hold it against me but dang I seriously was not the nicest (lost my cool, said I wasn't talking about it anymore in trying to explain something when I could have just said something differently in a better tone) and admittedly we both where probably over tired and frustrated about surgery being cancelled again but still on my part not one of my awesome moments! There's reasons I am not a morning person I guess.
The reason I share this really is one of my Pastors from Church had emailed this morning regarding surgery and postponement and said something along the lines of "God most certainly given you a lot of patience. You may not agree with that, but trust me...coming from an outsider's perspective, you have been blessed with a LOT of patience. What an example for the rest of us to learn from!"
I thought that was ironic to read after feeling so frustrated this morning but at the same time I sent back a message saying I appreciated the kind words and vote of confidence! It's nice to know people believe in you I guess or think that you deal with things well?!?
The Plasma is being run now to bring INR down with the Vitamin K will be given in oral form, low dose (hopefully that in turn won't affect to much our ability to get the INR back in range once released from surgery/in-pt!) - Vit K is notorious per my Cardiology Team for having longer term affect on INR manageability.
It's ironic really that after 3 days off the Coumadin (blood thinner) my level would still have been so high (normal for a mechanical heart valve pt. but to high for surgery) given we (my Cardiology Team) and I typically seem to have a somewhat difficult time keeping the level within the acceptable range - more often than not in the past 6mo. it has been to low vs. to high.
In the future for surgeries I think I am going to question my Cardiology Team about testing INR the week before any planned surgery so we'll have a better idea where my level is (to low, just right or high.) Doing an INR would mean we could perhaps better tailor when I stop the Coumadin according to that Lab result vs. this time we hadn't done an INR since the 1st wk of Nov. and so had no real idea if my level would be 'good' and just planned the stopping according to AHA/ACA guidelines - my Cardiologist and PMD suggestion as in the past.
The last surgery I guess I had kind of forgot about it but I think we may have stopped the med 5 days prior to surgery (Neurosurgery suggestion) and the surgeries before that I was pre-admitted the day before (for other reasons I think scans or something) and so we had an idea if INR would be ok enough the next morning. Those surgeries we had to give Plasma the morning of surgery.
I will close on a somewhat positive note that although my cough (from pleural effusion) is cont'ing to hang on tight, worsening as the day goes on my INR when re-drawn some hours after this mornings had already dropped from 2.2 to 1.9. The Plasma should bring it safely down the rest for tmrw!?
I close this praying for a safe surgery tomorrow, thankful for my Neurosurgeon and thankful for my family and those friends who continually check in on these surgery days!
Thanks for stopping by, God Bless,
Erica